Pippa's Journey with a Brain Tumour

The story of Pippa, her love of visiting and looking after greyhound pups, a little friend who missed her when she was away for treatment and finally, a dog named by her and racing in her memory…

Pippa Feeding one of the pups

Chips and Trains at 6 hours old

Chippa after his first race win

Best told by someone other than me and thus, as written by Molly Haines here in the latest issue of Greyhound Monthly of how Chips and Trains (affectionately known as Chippa) came to be

It’d be a bit fun for Chippa to become a well loved dog all around the country and have Pippa remembered through him. Another way I can keep my heartbreaking promise to Pippa that people won’t forget her. In the end that was her biggest fear and I can still feel the tears on our faces when she pleaded with me to not let that happen.

He’s got himself an Instagram account (follow @chipsandtrains) and proceeds from his winnings are donated to brain cancer research

“Go Chippa” you are bringing us a bit of fun and Pippa would absolutely love you

That’s precisely what it was. Saturday 13th February. The day when Pippa should have been jumping on my bed waking me up excited to open her 12th birthday presents.

Instead we woke silently and with no excitement. We had what Pippa would have ordered for her birthday breakfast – pancakes complete with nutella and strawberries of course. Thanks to a thoughtful friend of Pippa’s we even had a present to open.

The boys and I had a list to work through to get ourselves ready for the day. I most importantly had to make Pippa’s favourite chocolate mousse for her birthday dinner dessert. We needed to pack the car with things to take to the beach. A picnic had to be made and a cool bag organised to keep the drinks and food cold seeing as we were going to be there all afternoon. A birthday sign to make it a party of course was required. Flowers for the birthday girl. Chocolate Brownie. The motions were rolling.

My phone was busy with texts and calls like on any other birthday. The rule in our house on your birthday is that the birthday person has to answer every phone call. There was no birthday girl to do that.

The day was beautiful, the sun warm and the sky and the water at Port Fairy’s East beach were both crystal clear and breathtakingly spectacular. The only thing missing was the birthday girl turning cartwheels on the sand and calling out to me from the water, “Come on mum, why don’t you come in for a swim the water’s beautiful!” when I know too well it’s a touch on the refreshingly icy side of chilly. But that’s what she would have said with a cheeky grin on her face.

So many people came and went across the afternoon and I am incredibly grateful to everyone. It really was a strategy to help James, Patrick and me cope with what was always going to be a difficult day. Pippa described her 11th birthday as her best ever despite not being able to talk, eat or walk. I think Saturday was the best we could manage for her 12th birthday. It was in fact perfect, but…there was no birthday girl. I felt numb and empty.

People were sprawled all over the sand, on the grass bank, in and out of the water. Flowers were placed at the base of her memorial seat. Pippa’s friends swam, surfed, played cricket, built sand castles, used her kayak. At first everyone tentatively looked and marvelled at the seat but eventually the ice somehow broke and photos started to be taken of her friends sitting, standing and playing on it.

At one point I overheard some of the young boys standing around Pippa’s seat having a chat. They were talking about death and what it feels like to die. The result of this gorgeous conversation was that it doesn’t hurt to die and that it doesn’t matter how long it takes for you to die because when someone starts to die you go to the place where your dreams and memories are and that’s where you stay. You feel only good things and you don’t know time. And then they ran off back to the beach. It was utterly beautiful and I don’t know if these boys came up with this on their own or whether one of them had previously discussed it with some wonderful parents. Regardless, what I do know is that they certainly wouldn’t have been standing around a headstone in a cemetery or a plaque at crematorium having this conversation. This simple, casual chat makes the memorial seat even more special invoking such raw and innocent discussions in children that will help them all deal with such a difficult topic.

Toward the end of the day darling little 4 year old Lottie came up to me and said, “Ginya, I’ve been looking all day but I can’t see Pippa! I’m cross with her that she’s not here!” I said, “Oh Lottie, when I went in for a swim before I’m sure I saw her.” Together we looked up to the sky. It was no longer clear as some whispy clouds were floating around. We strained to see and eventually there she was – the faint crescent of the moon appeared in between the clouds. Lottie was absolutely thrilled to see that Pippa hadn’t missed her birthday. To Lottie, Pippa lives in the moon and she loves seeing her during the day time. They are always special days for Lottie.

We came home after a long day in the sun a little tired and with presents and cards to open and read. The day was not unlike any beach birthday party. It was simply missing three very integral parts:

there was no happy birthday song

there was no birthday cake

there was no birthday girl

Saturday 13th February was Pippa’s 12th birthday but she will never be twelve. Instead, she will always and forever be “Legs Eleven”.

Our thanks to everyone who made our day bearable. I love this very special photo

I was originally going to put this post on the end of the last entry, but it needs it’s own post simply because in the future I want to make sure I don’t forget about it at the bottom of a page.

James and Patrick continue to step up to the plate and each day fulfil their role of the world’s most loved and loving brothers who help in every way. Just like me their exhaustion and patience is tested. Just like Pippa they get sad and frustrated. Their love for their sister, however, never falters. Day after day they display their incredible skill of bringing Pippa up if she is down; making the time they have with her the best it can be. Their creativity flows and they lift Pippa’s emotions turning the simplest of situations into shrieks of laughter. Every little girl needs to know she’s adored by her big brothers.

Pippa had the best birthday awaking to the balloon filled house with two enormous boxes containing James & Patrick’s presents. Patrick’s she had to bash her way into to reveal a magic kit for Pippa and him to do tricks together and a photo of the school kids on the oval from the helicopter. James’ gift had to be driven out of the box – a remote control car that Pippa can sit in her chair and whizz around the lounge room. Pippa uses her hand to accelerate forward and backward and James steers. Later it was modified and turned into a weapon of mass balloon destruction! Or perhaps I should call it an ankle terrorising beast! Of course it was no surprise that both boys had included thoughtfully written cards with their gifts.

Pippa had her ears pierced and now wears the prettiest little blue earrings. Throughout the day our door was a constant stream of deliveries – each one bringing smiles and joy – balloons in all shapes and sizes, flowers, gifts, mail. On a hot day one poor florist came back at least 3 times!

We held her party at the cinema where all her friends were greeted by and treated to some laughter from Bubbles the Clown. Everyone enjoyed watching a few funny little pixar animations followed by a comedy of errors birthday party episode of Modern Family, “Fizbo”. We all marvelled at the magical illusions of Michael the Magician and anyone who asks Pippa will know that she put a yellow scarf into his magic hat but out came a $50 note! Finally, she had a birthday cake. Not a real cake though, one that James threw into Patrick’s face! Patrick had no idea and it literally knocked him for six! The party finished with exactly what Pippa wanted – Ice Cream with Mr Whippy waiting outside and everyone having had a great time.

Pippa came home and opened all her presents reading every single card. Today she was reading every word written on every card that was made by every one of the classrooms at school. She opened more cards and gifts that she didn’t get to last night and went through all the text and blog messages.

Pippa already knows she is loved by so many people far and wide – what a great feeling that is! This birthday has not only created another magical memory, but brought that love to life once again. Every gift she received was perfect and obviously so thoughtfully chosen for her. I wanted to share a framed poem written by one of her friends……

Happy birthday, my great friend,

Amazing times, we like to spend.

Fun and happiness, common for us,

A friendship that will never rust.

My special friend that I hold dear,

I always wish to have you near.

We stay together, like bees to honey,

a friendship worth, much more than money.

Happy birthday my great friend,

I’m so excited to attend.

Your thoughts are always clear, in my mind,

Both understanding we always find.

Pippa, I’m glad your birthday has come,

So be very proud of all you have done.

Now this poem is coming to an end, I just wanna

let you know you are such an

inspiring friend.

xxx

We have now had 4 fantastic days of Pippa being really great – lots of life about her, sparkle in her eyes, happy, cheeky and her “I can do it myself attitude” shining. It certainly must be birthday magic!

Thank you to everyone who helped make Pippa’s 11th Birthday so very Magical.

Today was a very special day for me. My grandpa Tony came at 11:30 to pick me up and take me out on a very special lunch at a very special place… called “Cheese World.” I had been planning to go to Cheese World with Tony for a while and today was the day. It was raining as we were driving there, but when we got to Cheese World we were greeted by some of Tony’s friends (he has lots of friends at Cheese World) Kim, one of his friends at Cheese World decided to have a chat with us. So we chatted and chatted and chatted and so on. I met lots of Tony’s friends and had fun. As we were leaving, Tony had to see a lady Lou for the Field Days. I told her that the Field Days was on my birthday last year and this year. We left Cheese World and headed off to Cudgee.

having a special lunch with Tony

When we got to Cudgee we went in to see the Bullocks (a type of cow). There was lots of Bullocks and one came right up to my door, I quickly took a photo of him, I also got a photo of Bullocks on their own, I got a few good shots even of Tony feeding the Bullocks and giving them their lunch.

Bullocks enjoying their lunch

Tony feeding one of his blackies

he came right to my door!! cheeky Monkey he is!

After that Tony and I drove down to Allansford and we went to my uncle Eugene’s house and I saw all my cousins. My cousins Scarlett and Stephanie were with their friend,we played UNO and went to Scarlett’s room.

We finally were able to get home, on the way home we had to pick up my grandma cause she was going to come home with us. I had a great day 🙂

26h June 2013. Today is 18 months on. Today is one day after Christmas Day. Today is the second Christmas we have made it through. Today is further than doctors had first hoped for 18 months ago. Today Pippa is still here with us.

I’ve collapsed many times in the past 18 months. The first was the first time I was told to be prepared for not much longer than 6 months. The second was the second time I was told to be prepared for not much longer than 6 months. Then there was 1st September when I was told there was nothing more that could be done or tried. There have been times I have been told to prepare myself for the worst in the coming hours and days. I’m not sure what number collapses they have been. For three weeks in a row I crossed my fingers and my heart each day willing us to make it a few more days. My heart is almost permanently collapsed.

Pippa is still here. She ruled the monopoly board again this evening. One day at a time and Pippa is still here. Christmas Day, of course, was a milestone. The next milestone is Pippa’s 11th birthday, but that’s a little way off yet. One day at a time.

Thank you to many many people across the past 18 months……….

Thank you to every single person who contributed to fundraising that occurred in September 2013 helping us live Pippa’s number one dream of visiting the Eiffel Tower in Paris. I made a promise to take her there one day sitting on the floor of the corridor waiting for one of many blood tests. I will never forget that heartbreaking conversation.

Thank you to everyone who has sent a single thought in our direction. Thank you to my many friends near and far, all of their friends and to new people and friends I have met along this journey. Thank you to those across the world who read this blog and think of us. Thank you to friends who drop by, ring, text and message. It all helps keep me standing. Thank you to anyone who has ever put themselves forward to spend some time with or do something for my boys. They are lucky to have so many good men around them who care about their wellbeing. Thank you to all of James, Patrick and Pippas’ friends. Thank you to their school. communities. Thank you to our family.

Thank you to James and Patrick for being the best brothers in the world, giving the best hugs, the best kisses and the strongest support.

Thank you to some of the funds and foundations that have helped catch my tears either down the phone or in person…….

Thank you to the doctors, surgeons, therapists, nurses, and hospital staff who have walked beside us and continue to do so. Thank you to Pippa’s oncologists at RCH and Peter Mac who have done the very best job they could, offered the very best treatment to a virtually untreatable disease and agreed wholeheartedly to do the further unproven treatment when I asked.

Thank you to Pippa who in the past couple of days has shed little tears with me behind the joyous front of Christmas. Thank you for being strong and fighting so hard without ever complaining. Not even once. Thank you for sharing Christmas 2014 with us. Your Presence is our Present. I know you are starting to get saddened by the differences that have taken over your body recently. I am still hoping this extra radiation is working and know that it ,combined with your strength and determination, is the reason we made it to Christmas yesterday. As we reduce the steroids your muscles will grow a little bit stronger for a little bit longer and we can spend more time together. Christmas is over now. Let’s start planning your birthday party. It’s not that far away, February 13th, we’d better start getting ourselves organised so we can look forward to it.

How exactly did we spend today, 18 months after I first heard the words Pontine Glioma? With family of course……A few of the Reas gathered for a family reunion. No better place to be today.